Hi lily. Sorry to hear about your distress. Since you have done so incredibly well for so long; its possible that you are having a relapse....but to be in relapse mode, you would have never had anyone tell you it WASNT MS to begin with.

So, were they wrong? Or what caused them to say it WASNT MS? Was this based on how you were feeling better, or was it based on testing?
Keeping in mind that Fibro and MS often go hand in hand, and many patients can have both--its possible that what you are experiencing now is related to your Fibro issues, and just as likely that its related to your MS issues.

The only way you are going to know is to start testing again. Its been so many years and tests have come so far- that what you were told 22 years ago may not have any relavance now at all.....however, starting with a good Neuro and going thru it again is probably a very good idea.

You asked, if you do not start drugs right away, could it become permanent? If you mean the symtoms, yes, if it is MS and it is ignored, symtoms can become permenant damage-thus resulting in permenant issues; however, that means ignoring those symtoms completely. If your doctor was to prescribe steroids to bring the swelling/ inflammation down, it would probably help.....if your doctor was to put you on an Interferon, a MS drug- it might not. MS Drugs do not treat symtoms, but rather help to prevent progression and additional symtoms from starting....and those take 6 months of use before they really start to help.

You do need to be in the testing process and talking to a good Neuro now- thats the first step, from there, getting tests done and seeing what shows up will answer your other questions.